Tackling Endometriosis One Blog At A Time

Month: August 2016

So last week when I wrote about flax seed, flax oil, lignans, Endometriosis, and estrogen levels (you can read it here), I emailed Good Karma to find out if they filter their flax milk. Supposedly, filtered flax has A LOT LESS (sometimes even no traces of) lignans (the phytoestrogen which may raise our estrogen levels).

Anyway, a representative from Good Karma wrote me back today, and I thought I’d share it with you.

My email:

Good morning! I was reading that you use cold-pressed flaxseed oil for your flax milk. Can you tell me if it is filtered or unfiltered flaxseed oil? I’m trying to determine if there lignans in your milk before I drink it. I suffer from Endometriosis and lingnans may increase my estrogen levels, which may alter my illness and treatment. Thank you, Lisa

Their response:

Hi Lisa, Our Flaxmilk is filtered, so there are only sparse traces of lignans in our oil. As lignans are part of the flax seed husk and associated with the insoluble fiber component in flax seed the majority of the lignans go with the seed cake after we cold press the seeds. Some lignans do remain with the sediment in the oil but this is filtered out by our supplier before we use it in our Flaxmilk! Please let me know if you have any additional questions! Cara

**

So, from my research last week and this email, I may go back to drinking Good Karma’s flax milk. It has been the best-tasting dairy alternative to milk…and it’s only $2.99, so it fits my budget. But we’ll see. I need to really dwell upon the thought. Perhaps I’ll wait until after my surgery and really, really, really think.

…UPDATE 7/26/17: I haven’t actually gone back to drinking flax milk. I just didn’t want to take that risk. Instead, I’ve moved to an unsweetened almond milk. 🙂

I have my second excision surgery scheduled for September 21, 2016! I’ve put together my list of pre- and post-op questions to ask my doctor. Do you have anything you think I should add? Or even delete? Thanks!! ~Lisa

Pre-Op (Appointment 9/13/16)

Please remember I need a latex-free operating room

Anything you can do to lessen the gas pain that occurs in my right shoulder? Tilt my head? Warm gas? Expel more gas before closing me up? What are the complications of any of these methods?

What to expect after cystoscopy? Any possibility I’ll stay overnight? I’ve read that a sensation of burning pee is a temporary side effect; anything else?

Would you take my uterus and ovaries, if needed? If so, please don’t use a morcellator.

Will there be pictures and/or video of the procedure? What about of the exterior of surgery: the table or outer-abdomen ports? I’m so curious!

What’s the worst case scenario?

How long do you expect the surgery to last? Any way someone can update my Mom and Jim as they wait in the lobby once surgery begins? Last time they expected surgery to last 1.5 hours and it lasted 4; nobody updated them on status and it was stressful and worrisome for them.

I know you found Endo on my diaphragm from our first surgery. Is there any way to verify through this upcoming surgery that you’ve removed it all? Or is that a thoracoscopy? Thoughts about my liver Endo?

Can you also examine the outside of my bowels? I’ve read that if you have Endo in your Pouch of Douglas you’re very likely to have it on your bowels.

Any other prescriptions post-op besides Naproxen Sodium? If so, can we fill them early?

Anything I can do to make your job easier on the Big Day?

After surgery, shall we restart taking continuous birth control?

Last surgery, I couldn’t lift my right leg to get into the shower for a few days. Is that normal?

Any “best” way to sleep while recovering? Last time propped up on some pillows seemed to be the least painful.

Post-Op (Appointment pending)

How long until we can have sex? Swim? Go to gym? Return to work?

Anything you or I can do to prevent adhesions? Do you have any thoughts on serrapeptese or resveratrol? A lot of Endo gals take them and swear it eats and prevents their adhesions from growing.

What happens if you found nothing? Referral to PCP for more referrals?

What do you find people do to try to feel better that is actually making their pain worse?

A fellow blogger, known as Mirror & Soul, was 32 when she was diagnosed with Endometriosis. Today she’s 38 and she wants to share her story with us.

Mirror & Soul’s Journey: She has shared her story on her blog and wishes to share it with us. Follow this link to read her tale.

Advice to EndoSisters: Don’t give up. Look for experts in the field to treat you.

The Last Word: There is hope for cure.

If you would like to contact her you can email her here. Or you can follow her blog here.

I want to send a special Thank You out to Mirror & Soul for sharing her story with us today and sharing a message of hope and strength!

And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

So we’ve previously read about a German Shepherd being diagnosed with Endometriosis. Today we’re going to talk about Mandrills (a form of primate that used to be considered a Baboon) who had been diagnosed with Endo. I’ve read a lot of previous studies where Endometriosis was purposely implanted into critters for study and dissection, but these primates weren’t for study.

There was a study from 2012 about a Mandrill that had died after showing signs of weakness and peritoneal bleeding. Upon autopsy they found her uterus was covered in blood clots and it was stuck to her ovaries and pelvic wall. The biopsy confirmed she had Endometriosis. This is considered the first confirmed case of Endo in a Mandrill.

Now, onto the 2016 article that landed in my inbox this week…but unlike the 2012 study, these two captive primates had surgery! Here’s their stories:

An 18-year-old Mandrill became lethargic and partially anorexic around her period (menses, if you want to be all scientific). She’d been housed with a mate and after three years of breeding had never become pregnant. Her symptoms were treated with Ibuprofen, and resolved within 2 hours of administration. Thirty-three days later, her symptoms returned…so her Keepers decided to check her out. Upon physical examination, her abdomen was found to have “firm swellings” on her right side (5cm in diameter) and her left side (3cm in diameter). Imaging studies confirmed she had cysts. They drained one of the cysts via ultrasound-guided fine needle aspiration and biopsied the dark fluid they collected : it seemed consistent with Endometriosis. Several weeks later, her Keepers decided to treat her with Lupron Depot, which ended up shrinking the cysts some. They administered Lupron Depot three additional times (by blow dart, I might add). Three months after her last injection, her symptoms returned. This time they treated her with Metacam (aka Meloxicam), which seemed to resolve her symptoms. Fast forward another year, when her symptoms again returned. Thirteen months later, she presented to the Kansas State University Veterinary Health Center for examination because her discomfort seemed “significant.” She again had masses on her right and left sides, confirmed via ultrasound. As a result of the findings and her continuing discomfort, they spayed her. That’s right; removed her ovaries and her uterus. During the surgery, they found adhesions (scar tissue) between her bladder, peritoneum, ovaries, and uterus, which severely affected the “architecture within the abdomen.” While removing the adhesions, her surgeons found numerous chocolate cysts (Endometriomas), which were also removed. During recovery, she was given pain killers and another two injections (one per month) of Lupron Depot. She received a confirmed diagnosis of Endometriosis.

A 24-year-old Mandrill underwent a routine ultrasound and they found “uterine changes,” including thickening of her lining. Everything else appeared normal. Three years later, she was seen for painful periods and bleeding from her rectum, but only during her period. The following month, these symptoms returned. They waited until her next period to perform and ultrasound and found a 2cm cyst on her left ovary, and could easily identify her right ovary; the uterus and cervix appeared normal. She also had a colonoscopy, which was normal, but they found her anus to have signs of trauma. She was given Lupron Depot, Tramadol, and Meloxicam for her symptoms and pain…(sound familiar for some of you reading this?). Despite the Lupron Depot, her symptoms worsened over the next three months. They decided to open her up and see what they could see. Her bladder was normal, but it was stuck to the side of her uterus by adhesions. Adhesions were also present between her bladder and her colon. Her ovaries were covered in adhesions, and they couldn’t even identify the right ovary because it was so obliterated. They were able to only remove three-quarters of her uterus because the last of it was too risky to remove without damaging other organs. The surgeons were also to remove a lot of her scar tissue. After biopsy, it was confirmed that she suffered from Endometriosis. She was given Tramadol and Meloxicam after surgery for a few days of recovery.

This study drew an interesting parallel to the suffering and treatment between humans and non-humans with this horrible disease. And I wish that the authors had been able to publish how those two Mandrills were doing since their surgeries.

I’m both fascinated and horrified at the same time on how these stories are so similar to those of sooooo many women. Those poor critters suffered…and suffered through Lupron Depot. And it breaks my heart that, whereas I can whine and complain and cry, these two hairy ladies could not. At least not in a way their Keepers could understand.

This disease just got a lot more ugly to me. And I didn’t think that was possible…

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

So for the past several months, I’ve been using flax milk instead of coconut milk in my tea, cereal, and protein shakes. I’d grown tired of coconut milk, and am also wanting to lose an unwanted and “sudden” 20-pound weight gain. It really wasn’t sudden, I just hadn’t noticed it until none of my pants fit…grrrr.

I’d read the flaxseed (also known as linseed) was a phenomenal source of Omega-3 fatty acids, protein, and fiber, and people boast of it’s anti-inflammatory properties. So I was ecstatic to try it out and actually not mind the flavor of flax milk! It’s gotta be good for my Endo, right?

That is, until this weekend, when someone on an Endo group on Facebook responded to my flax milk post that flax is bad for Endometriosis. Why? She didn’t say until several posts later, but it looks like flax seed and flax oil mimic estrogen, much like soy… *grumble grumble grumble*

But never one to take anything at face value, I’ve decided to do my own research and decide for myself if it’s something I’m going to give up…

I repeat, *grumble grumble grumble*.

What the Interweb Says

Flaxseed and soy are very high in plant estrogen which may mess with your hormones. Flaxseed contains lignans (found in the seed husk and fibers), a natural plant estrogen that many post-menopausal women consume to mitigate their menopausal symptoms. Melissa of EndoEmpowered found that after consuming flax oil for several months her pain flared up. Ut oh…sounds familiar to me…

The fiber of flaxseed is high in lignans, which may affect estrogen levels, although some believe plant estrogen may actually block estrogen in the body, rather than heighten the levels.

Some people grind up flaxseeds and either consume them as a powder or sprinkle them into food and beverage. Others partake of flaxseed oil in liquid or capsule form. And others, like myself, enjoy them in ready-made products such as a milk-alternative to dairy. Everything I’ve read says to not eat raw or unripe flaxseeds (they may be poisonous).

Flaxseed

Flaxseed oil

It is recommended that some women keep away from phytoestrogens (such as those found in flaxseed or soy), including women with:

a history of breast, cervical, or uterine cancer;

who have a BRCA1 or BRCA2 gene defect;

suffer from Endometriosis, fibroids, or PCOS;

women who are on birth control or hormone replacement therapy;

women who are pregnant or breastfeeding;

infants and toddlers; and,

teens and women under 30.

But, like all things in life, you discover the flip side. The Center for Endometriosis Care has an article promoting the dietary use of flaxseed for women with Endometriosis. The Center for Young Women’s Health also promotes the use of flaxseed as a valued source of Omega-3 fatty acids when dealing with Endometriosis. Herb Wisdom says it can be beneficial for treating Endometriosis symptoms, but women with Endo should first consult with their physicians before starting it. The Green Parent encourages Endometriosis sufferers to grind flaxseed and sprinkle it on cereal.

What Science Says

A 1997 study found that post-menopausal women who partook of a phytoestrogen-rich diet had fewer hot flashes and less complaints of vaginal dryness than the control group of the study.

A 2008 study found flaxseed to be an excellent source of Omega-3 fatty acids, which helped the body to eliminate excess estrogen. It also referenced that the fiber found in flaxseed helped promote healthy bowel movements, which also eliminates excess estrogen.

Another 2008 study found that postmenopausal women who consumed ground flaxseed had lower levels of estradiol, estrone, and testosterone. It concluded that dietary flaxseed may “moderately lower serum levels of sex steroid hormones…”

A 2009 study followed women who were taking flaxseed powder supplements. It concluded that there is a possible risk between diet and a risk of breast or hormone-dependent cancers. Hormone-dependent? Endometriosis is not a cancer, but is hormone-dependent.

Flaxseed consumption has been found to benefit men who are being treated for prostate cancer or post-menopausal women seeking symptom relief.

There are A LOT of studies of the benefits of consuming flaxseed, especially for it’s anti-inflammatory and Omega-3 fatty acid properties. There are also a lot of animal studies where flaxseed was given to critters prior their pregnancy, and uterine lining turned out to be a lot more fetus-friendly. But what I haven’t been able to find are studies directly correlating to Endometriosis and flaxseeds. And that’s frustrating.

What Are You Gonna Do?

There’s a lot of back and forth. It’s harmful. It’s helpful. Take it. Don’t take it. *augh*

It appears flax does alter some hormone levels. That alone encourages me (me, myself, and I) to cut it out of my supplements and diet because I am taking low-dose birth control pills specifically to maintain low-level hormones within my body. Why would I tamper with that? But that may not be your decision…and that’s okay.

Today I’ve written the people at Good Karma who make the flax milk that I’d been drinking. I read on their page that they use cold-pressed flax oil, but it doesn’t state whether it is filtered or not I’ve popped the question…And they wrote me back!!! You can read their response here.

Ground flaxseed with husks

I’ve read that some flaxseed oil does not contain any lignans since the ground flaxseed husks and fibers (which contain the lignans) are filtered out. But be careful! Not all flaxseed oils are filtered. Some pump up the amount of lignans in the oil. And some companies that filter their oil then reintroduce ground flaxseed back into the product to improve the taste and supposed benefits, but still call it filtered. Many healthy lifestyle webpages encourage you to purchase cold-pressed oil, as opposed to hot processed oils to preserve the beneficial properties. Do your own research and read the labels.

But back to you. What are you going to do? It really is going to boil down to YOUR personal choice. Do your research. Talk to your physician. Follow your gut-instinct and listen to your body.

Still want some great Omega-3 fatty acids, but want to stray from flaxseed? Try fish oil (oh man, do those pills reek…and make you burp reeky fish taste) or krill oil (krill are plankton and these don’t make me burp). I’m presently taking a krill and fish oil combo…stinky, but no burpies.

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

“Each of us is born with a box of matches inside us but we can’t strike them all by ourselves”

Surround yourself with friends and loved ones who will help you strike those matches. Find your passions. Support your ideas. Burn brightly. And avoid those toxic people in your life that try to snuff your flames.

C. was 23 when she was diagnosed with Endometriosis. Today she’s 29 and living in Staffordshire in the United Kingdom and she wants to share her story with us.

C’s Journey: I suffer with endometriosis, every day is a struggle with all the pain I have and feeling tired all the time. I also have a lot of hip and leg pain especially at night lying down its like having pressure in my thighs and hips and start getting sharp pains so I have keep moving all night from the left to the right side. And I have sciatica in my back sometimes. I’m not able to do much exercise either because I’m always feeling tired so I’m putting on weight.

The Last Word: I just wish there was a cure for this horrible disease, to be pain free and enjoy life and enjoy being a mum.

If you would like to contact C., you can email her here. I’m sure she’d love to receive some encouragement and hope.

I want to send a special Thank You out to C. for sharing her story with us today. May today be a better day than yesterday.

And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.